Greetings from Seton Hospital. I am still here and truly making the most of it. I have moved into a suite, so I have a bedroom that connects to a lounge area with a couch and side table with a lamp, a desk with a chair which is where I am typing from and a window and a TV. I feel like the Jeffersons…moving on up!

I will be here as long as my little JP drain continues to drain infected matter out of me. Better out than in right? I can be patient because I DO NOT want to come back here for this issue. Dr. Bagwell has been pretty clear that he could send me home with the drain but chances are, things could go awry and I could end up back here which would be a set-back. I am NOT into any more set-backs.

I have settled into a rhythm here at the hospital. After a night of changing sheets and gowns a few times due to cold sweats, I get up and shower, get dressed and then get hooked up for my morning 4 hour infusion of Zosyn antibiotic. Some beautiful friend or Becca brings me a smoothie or juice from Juiceland for breakfast. I spend the morning getting things done on the computer, I ordered a trampoline for the kids, something Charles and I have been talking about and decided now is the time! Jumping is not only super fun for the kids but also really good for one’s lymph system. So neighborhood and local Moms, Dads and friends, once it arrives, we expect you to come jump – we will have a bin full of maxi-pads for you ladies that trickle when you jump…(oh don’t act like you don’t know what I’m talking about). A side note in case you haven’t heard this legendary Bruce Family tale… When Becca and I were kids we got an Olympic sized trampoline for Christmas one year. Mom bought it from a gymnastics organization that was going under. We grew up in Philadelphia so winter meant cold, snowy weather. Who wants to jump in the snow? Not the Bruce girls. We grew up in a beautiful house that was built in 1859 and built for the times – meaning a big house with an elevator, servants quarters and all the formalities of an estate fit for a wealthy family in the 1800’s. What this meant for us was that the ceilings on our first floor were very high – I think 14 feet or more. And we had ample space. Space enough to devote the “Sun room” as the winter home for our trampoline. Becca and I even had trampoline lessons there where we perfected front and back flips and aerials. No net, and glass floor to ceiling french doors on two of the three walls that surrounded the trampoline.
Here is the Sun-room – it used to be a beautiful peach color – this photo is from when the house was last up for sale a year or so ago. You get the idea though.

This post has been dragging on…I started it on the 13th and it’s now the 15th. Dr. Bagwell decided to spring me from the hospital yesterday despite the drain still doing it’s thing. He figured I could handle doing the drain at home (flushing it and keeping track of the output). I now take the IV antibiotic every 8 hours through my port. The infusion time is 30 minutes. It’s a bit of a hassle but doable. Today I went to a conference downtown and had to do my infusion in the bathroom. The medicine comes in a little ball that deflates slowly while attached to my port by a little tube. I put the little medicine ball in my bra between the girls and nobody was the wiser as I sat through the luncheon. (Thanks Irma for the idea!). Hiding a drain and an IV isn’t easy but if you wear the right outfit, it can be done. I think I will need to invest in a few more billowy shirts.

I am so happy to be home, having dinner with my family, listening to my two cats hiss at each other (that’s what I’m listening to now), taking the kids to school, walking around my neighborhood with my sister, reading to Char, helping Phin with homework and waking up next to Charles. Thank you for the flowers and the meals at the hospital and the visits in the hospital and the rides for our kids and all the ways you’ve cared for us yet again. I will be on the IV drugs until Nov 13 and I don’t know when the drain will come out. I can’t start chemo until the infection is all clear. I am hoping I will be on the IV drugs less than the 6 weeks total that’s planned but I probably shouldn’t count on that. I’m almost 2 weeks into that 6 weeks.

In the meantime I will meet on Tuesday with the doctor that will be working with Dr. LaValley on my anti-cancer protocol. As soon as I get established with this doctor then I can start taking the supplements and any other medications Dr. LaValley decides on. I’m anxious to get started.

Charlotte wrote me this poem and gave it to me in the hospital, I love it. It’s all so true.

Time to do the IV drugs.
Nite, Nite,
xoxo

Hello Everyone,
I apologize for not updating sooner but to be honest I haven’t had the energy. I think we left off with me not going to chemo on the appointed day. So many crappy things have happened since then to two big ones being I’ve lost a lot of weight again – roughly 15 or so pounds. Same reason I lost it nearly two years ago, fear and control (or lack thereof). And I’ve been in the hospital at Seton in Austin since last Friday, October 2 with an infection in my liver from surgery. I’m still here.

Perhaps that little voice inside my head that told me not to start chemo was wise after all. If I had started, this infection surely would have festered longer and would have been that much harder to treat. Chemo can’t begin until this clears up. I have a drain that is clearing the puss (ooooh pretty) from my liver while I am being hammered with IV antibiotics. I have to stay in the hospital until the drain is ready to come out – I was banking on this Monday but it may be mid-week. Once I leave the hospital I will need to be on IV antibiotics for another 5 weeks. This will be done through my port. (oh Ms. Julie I guess it’s good I didn’t get it out after all…) I will be trained on how to do this through the office staff of my newest team member, the very smart, affable, takes his time with me, infectious disease guru, Dr. Todd Bagwell. He sees me here at Seton and he’s calling the shots as far as this infection goes. It is a strep infection in case you were really wanting to know and happened post-op. It didn’t show up in blood work even last Friday when I came into the ER for a low grade fever. (us cancer peeps are trained to run to the nearest ER when there’s a fever.) A CT scan finally revealed this lovely.

I have felt unwell since surgery August 17. Truly. My little spirit has been fluttering on the floor nowhere near enough energy or faith for it to soar. This infection is most likely why. Once we got the bilirubin issue fixed which gave me 2 weeks of nausea, this infection was starting to brew and kept me feeling icky. This is the ugly side of cancer – oh wait, that would imply there’s a pretty side. This is the underbelly of cancer, I’m really understanding that what often kills cancer patients is not the cancer but the complications from treatment. Your body gets worn out, your spirit gets broken and you no longer have the energy, the will, the faith to go forward. Being thin, feeling sick physically makes me feel down. It pulls me so far from my identity I start to lose Hilary. Small tasks like walking to the bathroom feel gargantuan. Your life becomes so small and isolated. This is where I have been some days. At home before I came into the hospital I was just trying to put one foot in front of the other and show up for my kids.

Once I got to the hospital it was a rapid spiral downwards. I’ve said it before and I will say it again, hospitals are not place to heal. The infection made me feel sick, the antibiotics did the same. I’ve had veins blow and screamed out in pain when the blood draw failed to yield blood and instead gave me another bruise. The people here are nice, it’s their job. I came in here broken and then I broke some more.

Then Thursday night after a shitty, shitty day I started to feel a little better. Charles and the kids were coming for pizza and a movie in my room. I rearranged the bed and furniture in my room and we had a really nice family night, all on my bed – raised as high as it would go (which is pretty high) thanks to Charlotte. That’s healing. Yesterday I had a break from the IV pole and was “FREE”. I walked home. It was lovely. I saw my kids, my husband, my cats, my sister, nephews and my neighbors. I was also walking down my street from a neighbors towards my house and got to shock and surprise friends Molly and Charlotte who were getting out of their UBER ride from the airport to visit. They were supposed to come to my house, see my family, grab my car and meet me at the hospital. Molly sees me from far away walking towards my house and she says to Charlotte, “that looks like Hills”, and Molly yells “Becca! You look so much like Hills” and I yell back, “It’s me, it’s Hills!” Those of you that know Molly Carroll know that speechless isn’t something she often is, but she was speechless. It was priceless.

So here I sit right now typing on a gorgeous Austin day in my hospital room with Molly, Charlotte and Amy Pappas who is a college friend. Amy is here for the ACL music fest. I have had wonderful visitors, orchids galore delivered, notes, meals delivered so I don’t have to eat hospital food, drawings, crystals and even a package delivered here to my hospital room which was a first – thank you Rox, Lindsay and Shanley for the gorgeous green shawl. So kind.

So the plan is to stay here until the drain stops draining then I go home to do IV drugs on a every 8 hours schedule – 30 minutes infusion time each time. THEN I can get back to dealing with this cancer re occurrence or whatever you want to call it. I’ll do some chemo, SOME chemo, don’t know yet how much and I will start working with Dr. LaValley who is a molecular biologist and he will be working up a protocol for me that is molecular targeted for my cancer cells. The protocol will consist of supplements and off-label medications. That’s the plan.

What can you do? Pray for me and my family that we will continue to have the strength to do what we need to do so we can get our lives back and endure what we need to so I can be cancer free. Do something kind for someone whenever you can because it always makes a difference. Private battles are always going on.

The infection is getting better. There’s an area outside the liver that seems to be infection also but we aren’t sure. Hopefully it’s not cancer, it is a possibility. I’ll try to be better about keeping you up to date. I have a lot a lot of healing to do. One day at a time.

xoxo Hilary